Going Home After TTP

When a patient is first diagnosed with TTP, it may be difficult to understand what has happened and what the diagnosis means. For most patients, the diagnosis will arrive suddenly and unexpectedly.

Early diagnosis of TTP is crucial

Key Points

Early diagnosis of TTP is crucial, as without treatment 90% of patients die.

Diagnosis is normally made by a combination of medical history, physical examinations and diagnostic tests.

Two important markers that may be monitored both throughout treatment and after treatment are platelet count & ADAMTS13 levels.

Diagnosis

In TTP, early and precise diagnosis is critical to successfully treating patients. When patients with TTP arrive at hospital, the most important thing is for their doctors to recognise and diagnose TTP as quickly as possible. Without the correct treatment, 90% of TTP patients will die from their condition. However, one of the greatest challenges associated with TTP is that it is a very difficult condition to diagnose. Patients may be young and healthy, without any previous history of serious medical conditions. They often first go to their doctor with general flu-like symptoms, that do not point directly to TTP. When their condition gets more serious and they arrive at hospital, their wide range of symptoms could apply to many different types of conditions making it a challenge to recognise and diagnose TTP. This challenge is made even more difficult because TTP is so rare.

Diagnosis is normally made by a combination of medical history, physical examinations, and diagnostic tests:

The medical history may indicate to the doctor that some of the potential triggers for TTP are present – such as having certain diseases or conditions or having taken certain medications

The physical examination may reveal some of the common symptoms of TTP such as bruising under the skin, yellowing of the skin, changes in the colour of the urine or neurological symptoms such as headaches or confusion

The diagnostic tests will help the doctor identify some other signs of TTP, such as low platelet count, low red blood cell levels and indications that some organs are not functioning properly

Going Home

You will be discharged home when your platelet count is within normal limits and plasma exchanging has stopped. When you do get home you will feel very tired. Your body has gone through a lot and your body is recovering from the damage. You Hb count may also be slightly low (anaemia). Take it easy and gradually ease into your old routine. Accept offers of help from friends and family. Consider going back to work part time at first if this is possible.

Everyone is different but some people feel a little overwhelmed when they get home and often feel tearful and upset. You may have been offered some counselling while in the hospital. If you feel you would benefit from this service as an outpatient locally to where you live, then please speak to your specialist nurse or GP. Remember you are not alone

Medication

You will be given some medication to take home. This will probably be: • Aspirin – to help make you blood less sticky • Ranitidine (or similar) – to protect the lining of your stomach if you are taking Aspirin • Folic acid – to speed up the red cell production if you are still anaemic Most people generally have these but some additional medication may be supplied if necessary.

Dos & Don'ts

DON’T start any new medication without contacting your consultant first, including the contraceptive pill and malarial tablets.

DON’T believe all you read on the internet about TTP or the treatments. Not all this information is from reliable sources or up to date.

DON’T feel that you are being silly if you have any questions – please contact your TTP specialist nurse or consultant.

DO check with your consultant before you travel abroad; there are specialist insurance companies that will insure you at reasonable rates.

DO speak to your Consultant Hematologist if you are considering starting a family.

What To Do If You Feel Unwell

When you first go home you should expect to feel tired, but there are some things to look out for. If you have:

Headaches not relieved by paracetamol.

Blurred vision, dizziness or confusion.

Easy bruising without obvious cause.

Dark urine.

Feeling unwell and are worried.

Call your TTP nurse specialist or the hospital who may have also given you a help line number. In the majority of cases you will be absolutely fine and most people do not relapse. Ask for a blood test if you still feel worried.